The Pathology Model vs. the Neurodiversity Paradigm

If you aren’t sure that a pathology paradigm is so bad, I want to simply place the language of pathology side by side with the words of a neurodiversity paradigm, and let you put yourself in the shoes of someone on the receiving end of each. 

In an October 2020 article for the ADDitude Magazine, reviewed by ADDitude’s ADHD medical review panel, Janice Rodden offers up the typical language of the pathology paradigm:

Common symptoms of autism in adults include:

  • Trouble interpreting facial expressions, body language, or social cues
  • Difficulty regulating emotion
  • Trouble keeping up a conversation
  • Inflection that does not reflect feelings
  • Difficulty maintaining the natural give-and-take of a conversation
  • Tendency to engage in repetitive or routine behaviors
  • Only participates in a restricted range of activities
  • Strict consistency to daily routines; outbursts when changes occur

This feels, at the least, like an unnerving suspicion of me and people like me. We have all these “difficulties” and “troubles” and strange “tendencies” and “outbursts.” We are weird. We are less than.

I am not whole. I am unnatural.

Ironically: notice that many of these items are not at all limited to people on the spectrum! I know plenty of neurotypicals who have “difficulty regulating emotion,” but in them, we might call it passion – say, the quarterback who pumps his arms and screams when he hits his wide receiver in the end zone on any given Sunday. We admire it; we pay to see emotion…..as long as it’s shown in acceptable neurotypical ways. A word for this is ableism.

And how about “only participates in a restricted range of activities”? Does that mean the neurotypical brain is characterized by participation in a wide range of activities? Because I know many people who come home from the same job night after night for decades and do pretty much the same thing: crack open a beer and watch television until bedtime. 

Below is another list, even worse, written for MedicineNet. This is from Dr. Melissa Conrad Stoppler, a US board-certified anatomic pathologist with subspecialty training in the fields of experimental and molecular pathology. Dr. Stoppler is co-editor-in-chief of Webster’s New World Medical Dictionary. In other words, she’s a gatekeeper of language, an influencer with the power to shape the ways people think and talk about autistic lives. 

Note that this is the first item that comes up on Google as of this writing when searching for “symptoms of autism.” I used the word “symptoms,” a term used by those employing a pathology paradigm, rather than the neutral terms “characteristics” or “traits”:

Other autism symptoms and signs

  • Abnormal Body Posturing or Facial Expressions
  • Abnormal Tone of Voice
  • Avoidance of Eye Contact or Poor Eye Contact
  • Behavioral Disturbances
  • Deficits in Language Comprehension
  • Delay in Learning to Speak
  • FLat or Monotonous Speech
  • Inappropriate Social Interaction
  • Lack of Empathy
  • Lack of Understanding Social Cues
  • Not Engaging in Play with Peers
  • Preoccupation with Specific Topics
  • Problems with Two-Way Conversation
  • Repeating Words or Phrases
  • Repetitive Movements
  • Self-Abusive Behaviors
  • Sleep Disturbances
  • Social Withdrawal
  • Unusual Reactions in Social Settings
  • Using Odd Words or Phrases

How do you think it is to be autistic and be described in those ways? To have your everyday traits and habits, which you’ve been made to feel ashamed of in brutally harmful ways since childhood, described to every Google user around the world as “abnormal,” “inappropriate,” “lack[ing],” “disturb[ed],” “withdraw[n],” “self-abusive,” “poor,” and “odd”?

Compare the damaging tone and substance of these bullet points to the list of traits of autistic people, written in highly accessible language, by the Autistic Self Advocacy Network (ASAN). Note the emphasis on differences rather than “abnormalities,” “troubles,” and “outbursts.” I want to quote this material at length rather than try to summarize it. It is, in my opinion, the best language we currently have. It’s clear, respectful, honest, comprehensive, nuanced, and spectrum-oriented (note the use of “might” and “may” as expressing possibility and probability while also accounting for differences among individuals). It is, indeed, the language I hope professor and students will adopt in autism studies here and at other universities:

Every autistic person experiences autism differently, but there are some things many of us have in common.

  1. We think differently. We may have very strong interests in things other people don’t understand or seem to care about. We might be great problem-solvers, or pay close attention to detail. It might take us longer to think about things. We might have trouble with executive functioning, like figuring out how to start and finish a task, moving on to a new task, or making decisions. Routines are important for many autistic people. It can be hard for us to deal with surprises or unexpected changes. When we get overwhelmed, we might not be able to process our thoughts, feelings, and surroundings, which can make us lose control of our bodies.
  1. We process our senses differently. We might be extra sensitive to things like bright lights or loud sounds. We might have trouble understanding what we hear or what our senses tell us. We might not notice if we are in pain, or hungry. We might do the same movement over and over again. This is called “stimming,” and it helps us regulate our senses. For example, we might rock back and forth, play with our hands, or hum.
  2. We move differently. We might have trouble with fine motor skills or coordination. It can feel like our minds and bodies are disconnected. It can be hard for us to start or stop moving. Speech can be extra hard because it requires a lot of coordination. We might not be able to speak at all – even though we can understand what other people say.
  3. We communicate differently. We might talk using echolalia (repeating things we have heard before), or by scripting out what we want to say. Some autistic people use Augmentative and Alternative Communication (AAC) to communicate. For example, we may communicate by typing on a computer, spelling on a letter board, or pointing to pictures on an iPad. Some people may also communicate with behavior or the way we act. Not every autistic person can talk, but we all have important things to say. 
  4. We socialize differently. Some of us might not understand or follow social rules that non-autistic people made up. We might be more direct than other people. Eye contact might make us uncomfortable. We might have a hard time controlling our body language or facial expressions, which can confuse non-autistic people or make it hard to socialize. Some of us might not be able to guess how people feel. This doesn’t mean we don’t care how people feel. We just need people to tell us how they feel so we don’t have to guess. Some autistic people are extra sensitive to other people’s feelings.
  1. We might need help with daily living. It can take a lot of energy to live in a society built for non-autistic people. We may not have the energy to do some things in our daily lives. Or, parts of being autistic can make doing those things too hard. We may need help with things like cooking, doing our jobs, or going out. We might be able to do things on our own sometimes, but need help other times. We might need to take more breaks so we can recover our energy.

From  “On the Spectrum: Autism, Faith, and the Gifts of Neurodiversity” by Daniel Bowman Jr.

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